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Predictors and Prospective Course of PANS: A Pilot Study Using Electronic Platforms for Data Collection
Elizabeth C Harris1, Christine A Conelea1, Michael T Shyne2
1Division of Child and Adolescent Psychiatry, Department of Psychiatry and Behavioral Sciences, University of Minnesota, Minneapolis, Minnesota, USA.
Insights
Longitudinal studies on Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) are limited. This study used digital platforms to track PANS symptoms, finding that delayed diagnosis and caregiver burden predict symptom worsening over 12 weeks.
Area of Science:
- Pediatric Neurology
- Neuropsychiatry
- Digital Health
Background:
- Longitudinal data on Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) are scarce, hindering understanding of its course.
- Existing research on PANS is predominantly cross-sectional, limiting insights into symptom evolution.
- Prospective monitoring is crucial for identifying predictors of PANS symptom trajectories.
Purpose of the Study:
- To prospectively monitor neuropsychiatric symptoms in children with PANS using digital platforms.
- To identify baseline clinical characteristics that predict the 12-week course of PANS symptoms.
- To compare compliance and agreement between different electronic data acquisition platforms and parent-child symptom ratings.
Main Methods:
- 20 children with PANS and their parents participated for 12 weeks.
- Weekly symptom ratings were collected via REDCap (Research Electronic Data Capture).
- Parents also completed tri-weekly ratings on the My PANDAS Chart website, with regression analyses applied to longitudinal data.
Main Results:
- A longer delay between PANS onset and enrollment correlated with worsening parent-rated symptoms (p=0.05).
- Higher baseline caregiver burden predicted more severe child-reported symptoms over 12 weeks (p=0.01).
- Weekly REDCap compliance was 86.3%, while tri-weekly My PANDAS Chart compliance was 53.8%; moderate parent-child agreement on symptoms (r=0.55, p<0.0001) was observed.
Conclusions:
- Electronic methods are effective for tracking longitudinal PANS symptoms in children.
- Delayed PANS identification and increased caregiver burden may indicate a more severe short-term symptom course.
- Baseline characteristics can inform predictions about individual PANS trajectories.
Abstract:
Little is known about the longitudinal course of pediatric acute-onset neuropsychiatric syndrome (PANS) because existing literature is primarily cross-sectional. To begin to address this gap, two digital platforms were used to prospectively monitor neuropsychiatric symptoms in children with PANS. The aim was to identify baseline clinical characteristics that would predict the course of neuropsychiatric symptoms over 12 weeks. We compared relative compliance between two electronic data acquisition platforms and evaluated agreement between parent-child ratings of symptoms. For 12 weeks, 20 children with PANS and their parents completed weekly rating scales of neuropsychiatric symptoms on Research Electronic Data Capture (REDCap) and concurrently parents completed tri-weekly ratings on My Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) Chart, a symptom monitoring website. Longitudinal data were analyzed by using regression analyses. Greater duration of time between onset of PANS and study enrollment was associated with worsening of parent-rated neuropsychiatric symptoms over 12 weeks (p = 0.05). Higher scores on parents' Caregiver Burden Inventory at baseline predicted that children would report more severe symptoms over the 12-week period (p = 0.01). Compliance rates for parents were 86.3% for the weekly REDCap PANS Symptoms Rating Scale compared with 53.8% for the tri-weekly My PANDAS Chart ratings. There was moderate agreement between children and parents on the PANS Symptom Rating Scale (r = 0.55, p < 0.0001). Our study highlights the utility of electronic methods for tracking longitudinal symptoms in children with PANS and suggests that particular baseline characteristics (e.g., delay in identification and treatment of PANS, greater caregiver burden) may be indicative of a differential trajectory of PANS course, with more severe symptoms over the short term. clinicaltrials.gov NCT04382716.
